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Very worried about referral for high PSA

User
Posted 17 Jun 2018 at 15:25

No, this isn't a bone scan, Alan. That (as you know) involves nuclear medicine and an injection of a radioactive marker. What I'm having on Wednesday is an MRI scan to look at my bones, presumably for the purpose of looking for signs of mets, and I'm told that no marker will be involved.

If anyone does know more about it, it would be good to know! Failing that, I'll ask the medical staff when I go on Wednesday what the purpose of the MRI is.

Chris

Edited by member 17 Jun 2018 at 15:41  | Reason: Not specified

User
Posted 17 Jun 2018 at 15:53
Hmm. Your question led me to do a little reading, Alan, and now I'm puzzled too, because it seems that an MRI can only image soft tissue, not bones. I wonder if he when he said "skeletal scan" he just meant a scan of my whole body to see if anything else shows up (like the kidney tumour did)? Maybe I'm worrying unnecessarily about him looking for bone mets?

Chris

User
Posted 18 Jun 2018 at 11:51
I phoned my oncologist's secretary first thing this morning, and my oncologist kindly phoned me personally an hour later. I explained that the urologist had said he thinks my cancer may be metastatic, and I was in a panic about it, and the oncologist went up the wall. He said that there's no way the urologist should have said that, and that there's absolutely no evidence to support the idea that I have anything other than localised cancer. He supports the idea of the skeletal MRI scan on Wednesday (which apparently can pick up bone tumours) to rule this out, but says that given the fact that neither my previous mpMRI scan nor the two subsequent CT scans picked up any bone abnormalities makes him pretty confident that the scan will come back negative. He said that he'll personally look out for the scan results at the imaging MDT meeting on Friday and give me a ring to let me know the results as soon as the meeting finishes.

So I'm feeling a little calmer after that.

Chris

User
Posted 20 Jun 2018 at 08:14
Today is the day of my "skeletal scan" MRI. Feeling really scared about this one (not the scan, but the outcome). I'm trying to maintain a positive outlook, but I must admit that I'm absolutely dreading the phone call with the results.

Chris

User
Posted 20 Jun 2018 at 08:52

Hi, Im new to this forum all I can say is in 2003 I had a PSA of 27 , I had the radical surgery with nerve sparing which then was new, Its the best thing ive ever had and 15 years down the line still going well.

Budgie.

 

User
Posted 20 Jun 2018 at 09:10

Originally Posted by: Online Community Member
Today is the day of my "skeletal scan" MRI. Feeling really scared about this one (not the scan, but the outcome). I'm trying to maintain a positive outlook, but I must admit that I'm absolutely dreading the phone call with the results.

Chris

Tomorrow, Thursday 21st is my 2 month review to see if I have responded to the hormone therapy. I too am really apprehensive on what the outcome might be. I know I am T2c (locally advanced) but that doesn’t help. Comments on here by Lyn should have made me more positive, but we are human after all. We can compare our news soon Chris. Chin up mate

User
Posted 20 Jun 2018 at 09:53
Very best of luck to you, too, Alan. Here's hoping for good news for us both.

Very busy day for me tomorrow. At 9am I'm seeing the vascular surgeon to find out (hopefully!) what treatment the vascular MDT recommended for my aneurysm when they met last Friday (best outcome would be "none"!), and then at 11:15 I'm seeing the renal surgeon at a different hospital (luckily only half an hour away from the first), at which meeting I hope to get a definite plan for my kidney surgery. So on that side of things it looks as if things are really moving forward now and I hope there'll be a definite plan in place by tomorrow.

Just the staging of the prostate cancer that's the big worry. Hope my oncologist's optimism is justified! Keeping everything crossed for a negative scan result.

Take care,

Chris

User
Posted 20 Jun 2018 at 15:50
OK, scan done. I was in the scanner for an hour and a half, which is an awfully long time to lie completely still without moving a muscle! Now just a case of waiting for the results. The radiologist said "either Friday or Monday" for the results. I really hope it's Friday - don't really want to go through another weekend not knowing.

Still, another step along the journey completed.

Chris

User
Posted 21 Jun 2018 at 13:46
Phone call from my oncologist at 11 o'clock this morning, and he's also emailed me the radiology report. Scan has come back clear: "No convincing evidence of bony metastatic disease" (which apparently is as far as they're ever willing to commit themselves when it comes to reporting negative findings). I was scanned from eye-level to pelvis and it did find all the other stuff I knew I had wrong with me (which is good) and nothing new (which is even better). Feeling as though the weight of the world has been lifted from my shoulders. I've gone through some pretty rocky times along this journey so far, and I'm sure there'll be other bad days in the future, but this has probably been the worst week of my life, and I've come through it, so feeling utterly drained, but very, very relieved. Maybe now I can catch up on a week's eating and sleeping!

Some slightly less encouraging news about the splenic aneurysm, which was looked at by the vascular MDT on Friday last. 4cm aneurysm only 1.5cm away from my spleen. What they've decided to do is a procedure where they'll try to insert lots of tiny coils into the aneurysm, with the idea that blood will clot around these and completely block it off ("embolyse" was the word he used). Apparently, though, there is a high risk (he wouldn't put a number on it, but I gather it's kind of the expected outcome) that doing this will block off the blood supply to the spleen, resulting in the necessity to remove the spleen (a "splenectomy"). You can live without a spleen, but it makes you more susceptible to infections, since the spleen is an important source of white blood cell production. So, the plan is that I'm to start a 4-week course of being vaccinated against every disease known to man at my GPs, and then at the end of the 4 weeks be admitted to hospital for this procedure to insert the coils. They'll then keep me in for observation. If all goes well, fine. If not, there'll be a surgical team ready and waiting to perform the splenectomy. This would be quite significant surgery. If they open me up to do this, they'll also remove the whole of my left kidney (where the tumour is) at the same time, to avoid having to do two operations. If the process to embolyse the aneurysm is successful, I'd go ahead with the robotic partial kidney removal shortly after.

So, we have a plan! I'm feeling really (unreasonably, in fact!) happy now. And it's looking likely that the prostate cancer is localised, after all, so it all should be fixable.

I feel that this is a turning point in my journey. The first time I've had a scan that hasn't actually shown anything else wrong!

Chris

User
Posted 21 Jun 2018 at 14:04

You and me both then Chris😀

8 weeks of Decapeptyl Hormone Therapy has reduced my PSA from 38 at diagnosis to 6 today. To most a reading of 6 would be bad news, but for me it’s excellent.

My Testosterone was at 0.8 not sure what normal reading for 66 year old should be, but I’m sure Oncologist said 6

So my curative pathway looks established. I get second Decapeptyl IM injection 23rd July, then start External Beam RT 6th August and only 4 weeks, as I have responded so well.

I feel the best mentally, since initial diagnosis late January, nearly 5 months ago minus a week.

Heres wishing you the best Chris and I’m glad things are brighter for you. Get that holiday in soon as you can

Alan

User
Posted 21 Jun 2018 at 14:10

That's brilliant news, Alan - I'm delighted for you!

Fingers crossed, we're both on the road to a cure now. I'm looking forward to my holiday now .

Chris

Edited by member 21 Jun 2018 at 14:11  | Reason: Not specified

User
Posted 21 Jun 2018 at 14:51
Double congratulations then :-)

Chris, very very happy for you - that onco really was the voice of doom, wasn't he. Tawt. I did wonder if they would be able to whip the kidney out while they were on with the aneurysm.

Allan, normal testosterone range is quite high but what they are looking for in a testosterone test while you are on hormones is that you are below or heading towards castrate level. Castrate level is 0.69 so to be down to 0.8 so quickly is really good - confirmation that the decapeptyl is working :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jun 2018 at 15:25
So pleased you feel relieved, positive and happier. May the force be with you.
User
Posted 21 Jun 2018 at 17:32

Originally Posted by: Online Community Member
Double congratulations then :-)

Chris, very very happy for you - that onco really was the voice of doom, wasn't he. Tawt. I did wonder if they would be able to whip the kidney out while they were on with the aneurysm.

Allan, normal testosterone range is quite high but what they are looking for in a testosterone test while you are on hormones is that you are below or heading towards castrate level. Castrate level is 0.69 so to be down to 0.8 so quickly is really good - confirmation that the decapeptyl is working :-)

Thanks Lyn, you were correct of course in your advice about my reaction to 8 weeks of hormone therapy would definitely work. My Oncologist was also happy with PSA drop from 38 to6. I was offered HDR Brachytherapy as well as RT, but as the Oncologist said my response to hormone therapy and being T2c confirmed meant 4 weeks RT would suffice. So I decided HDR Brachytherapy was not for me. It was explained well, the reduction in side effects benefit of HDR.

 

User
Posted 22 Jun 2018 at 14:46
I've had a very interesting chat with one of the PCUK nurses today, and I asked her about the "skeletal scan" MRI I had on Wednesday to look for bone mets, because it was something I'd not heard of before, and haven't seen mention of on here, either. She said it's regarded as the "gold standard" for looking for bone mets, and is much more sensitive than the isotopic bone scan that's far more commonly used, and said I was very fortunate to have been offered it. She said that given the fact that it had come back negative, and that both it and all the previous scans had seen no lymph node involvement should make me confident that my cancer is still localised and hence "curable", even though my PSA is quite high at 31.

Feeling significantly happier after speaking to her. All the PCUK nurses are great!

Chris

User
Posted 22 Jun 2018 at 15:33

Originally Posted by: Online Community Member
I've had a very interesting chat with one of the PCUK nurses today, and I asked her about the "skeletal scan" MRI I had on Wednesday to look for bone mets, because it was something I'd not heard of before, and haven't seen mention of on here, either. She said it's regarded as the "gold standard" for looking for bone mets, and is much more sensitive than the isotopic bone scan that's far more commonly used, and said I was very fortunate to have been offered it. She said that given the fact that it had come back negative, and that both it and all the previous scans had seen no lymph node involvement should make me confident that my cancer is still localised and hence "curable", even though my PSA is quite high at 31.

Feeling significantly happier after speaking to her. All the PCUK nurses are great!

Chris

I 100% Agree with you Chris over the last eight weeks I have spoken twice to the PCUK nurses and at both times the conversations have helped me immensely deal with the situation I’m in. Their empathetic advice and counselling has definitely been invaluable not only with experienced advice, but dispelling rumours and mis information. I think every new addition to this PCa “family” should start off their journey by getting support from these wonderful professionals 

User
Posted 22 Jun 2018 at 17:36

Originally Posted by: Online Community Member
I've had a very interesting chat with one of the PCUK nurses today, and I asked her about the "skeletal scan" MRI I had on Wednesday to look for bone mets, because it was something I'd not heard of before, and haven't seen mention of on here, either. She said it's regarded as the "gold standard" for looking for bone mets, and is much more sensitive than the isotopic bone scan that's far more commonly used, and said I was very fortunate to have been offered it. She said that given the fact that it had come back negative, and that both it and all the previous scans had seen no lymph node involvement should make me confident that my cancer is still localised and hence "curable", even though my PSA is quite high at 31.

Feeling significantly happier after speaking to her. All the PCUK nurses are great!

Chris

 When I got my Gleason score it included my T rating as well.  That is the results that you are waiting for now Chris for example I was T2c

 And this means although my Gleason total is nine,  it is still totally within the prostate  and I think that is the good indicator that you will be on a curative pathway like me.  The news that you have no mets must be so reassuring for you and after our chat on the phone  and reading some of your comments on here I am so glad you are in such a better place.

 There will be no more news and updates from me on my situation until after my radiotherapy finishes at the end of August but I will be on here regularly to try my best to give some help to new members recently diagnosed 

Edited by member 22 Jun 2018 at 17:37  | Reason: Not specified

User
Posted 26 Jun 2018 at 09:44
Thanks, Alan. Yes, I'm in an enormously better place mentally now. Although last week was absolutely horrendous I think it's actually been beneficial, in that I'm feeling a lot more accepting now about what I actually do have, which it now seems is almost certainly localised PCa. Even if the template biopsy finds more active cancer than the Gleason 3+3 that's shown up so far, I am, as you say, on a curative pathway that will probably be the same as yours (HT+RT).

Yesterday I had a phone call and a long chat with a very nice lady who's a specialist prostate cancer nurse at the Clatterbridge Cancer Centre on the Wirral (which is where I'll be treated). She will be my point of contact with "the system", which is reassuring, because I wasn't sure that would happen given that I've had everything done privately up until now. At least is reassures me that I'm now officially in the system, and that my treatment will (eventually) start.

This afternoon I visit the nurse at my GP's surgery to have an enormously long list of vaccinations to prepare me for the likely removal of my spleen in a few weeks when I have the splenic artery aneurysm sorted out.

Chris

User
Posted 29 Jun 2018 at 09:03
Got an appointment through for my template biopsy: Monday 23rd July. That should hopefully be the end of my diagnostic journey and I can start treatment soon after, which I'm really looking forward to - feels like an eternity since I was initially diagnosed, although in reality it's only been a little over a month.

I'm going away on a fortnight's holiday tomorrow, and everything really kicks off immediately I get back. Got a pre-op assessment for my kidney/spleen surgery a couple of days after I get back (Monday 16th), the template biopsy the following Monday, and I hope to get the surgery done soon after that.

Chris

User
Posted 20 Jul 2018 at 09:44
An update:

I had a very enjoyable holiday, which did me the world of good. A much needed "change of scene".

This week I've had two pre-operative assessments at different hospitals.

This coming Monday (23rd July) I'm being admitted as a day patient to the Clatterbridge hospital on the Wirral for a template biopsy under general anaesthetic. This will (hopefully!) be the final diagnostic procedure before prostate treatment commences.

The Monday after that (30th July) I'm being admitted to the Countess of Chester hospital (in Chester) for treatment for my splenic artery aneurysm. I'll have a thin tube inserted into the femoral artery in my groin, where it'll be guided to the appropriate place and lots of tiny coils inserted into the aneurysm to block it. I'll then be moved to a ward for overnight observation. If all goes according to plan, I'll go home the next day. If the artery becomes blocked (which there's a significant risk of) I'll go into surgery to have my spleen removed, which obviously will then entail a more extended stay in hospital, so I'm going prepared for the latter eventuality. I'm told that the procedure carries a small risk of stroke or death, but it needs doing, and I guess no operation is without risk, so so be it.

Then in the middle of August I'm due to have the surgery to remove my kidney tumour. The results of the prostate biopsy should also be back by early August, so I would expect to start whatever prostate treatment they decide on around then, too.

So things are moving on. Just keen to get it over and done with now!

Chris

 
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